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Yeah, because the objective is to treat not to improve the life of the patient. Would that attitude be okay for a dentist or an optician? Yet they expect to be regarded with the same respect. Worse still, we know there are good mental professionals out there who are tainted by association.

Yep. True. I am as sure as it is possible to be without going and having a test that my T4 levels are about right at the moment.

Does anyone remember the life of Bryon? "We're the people's front of Judea! No we're not we're the Judean People's Front!". Or something quite similar . These therapists & their therapies are like a dodgy double glazing company that rip people off and the open up shop again as a completely...

I wonder if that's a reflection of severity - that for the more severe end of the scale symptoms are so bad and function is so reduced there isn't a lot of room for fluctuation? I am classed as severe by a specialist, although it sounds as though I am less severe than you, & I recognize the...

Not so much wound healing but connected. I wondered if anyone else finds they're slow to stop bleeding? I don't have any family history of blood clotting disorders. I had a very recent tooth extraction that wouldn't stop bleeding. It wasn't an excessive quantity of blood, it just wouldn't...

That's the way of BPS. Mix in a couple of grains of truth, several dollops of correlation=causation, plus a heaped barrel of misinterpretation. What about the effects of positive emotions, that's what I want to know. Did they even look? I know extremes either way have an effect on me - the...

Yep. Nothing against mental health support where it's needed or wanted but where it isn't needed or wanted it can often just place an extra burden on the patient. They never seem to figure out that time, energy and resources spent this way might be more productively spent elsewhere. Even if...

This right here is what really bothers me. I've noticed a knee jerk reaction before when being asked questions about job or life events or whatever. That sounds stressful, therefore you must be stressed, therefore we can help you cope with that. Without actually asking if you feel stressed or...

I think there's a difference between PEM at a level that is triggered by day to day activities and PEM that is triggered by a single or discrete event that might be repeated during the course or a week or month, or not. In terms of the latter I have at times experienced PEM immediately and at...

Is there an Irish equivalent to NICE @Tom Kindlon? The HSE or above? Are there any written guidelines for treatment for ME? I'm wondering if there's someone who could be lobbied for an interim type statement like the one fro. NICE recently.

Ha! Apparently not. I know of an individual who used this as an example when talking to a psychiatrist. She had been taking notes throughout the appointment and showed the notes to the psych to demonstrate what she meant. The psychiatrist told her that the deterioration in her writing was...

These guys really are clueless, aren't they? If you're struggling to manage the basics of keeping yourself fed and watered, you're struggling to cope with a health system that isn't designed with the chronically ill in mind and banging your head against the rock face of an unyielding benefits...

I've scanned them. While there's a fair bit I'd argue with, they aren't aimed at ME patients. For those with very mild ME, or other conditions they may well be fine. I liked that they pointed out that it is important to reserve some resources for things you enjoy. That is pretty important...

Based on I view this a bit differently. Person-centred care meaning that if the patient isn't responding as expected or the treatment is making them worse then how the patient responds should take precedence over the guidelines. This could be read as a warning shot over the bow. However, as...

Yep. That really jarred for me. It's an interesting piece but I was struck by the obvious - it is one thing to "know" about something and entirely another to "experience" it. As a pre teen youngster when a parent became rapidly disabled by a painful, chronic illness this seemed fairly obvious...

Like the others, I agree this doesn't necessarily indicate that your daughter no longer suffers PEM. The CPET is taken on 2 consecutive days but my window for PEM has ranged from immediate to up to 3 days, especially for a one off activity rather than daily life. This is why I'm like a broken...

No. Not really. Progress is frustratingly slow but there's probably more going on now than ever before. The covid pandemic will inevitably have slowed things down but, on the other hand, may lead to research that helps in the long run. The most heartening thing recently, for me anyway, is...

50% more than 0 is zero. Heck, 100% more than zero is still zero, isn't it? Or has the field of maths also been infected by the pandemic. Lets face it, it would be difficult for them to achieve less compassion and be less reasonable. Note, I said difficult & not impossible - these are highly...

Two thoughts - 1. Surely the pandemic, with many patients left struggling in it's aftermath, makes it even more important that this inquiry takes place and the system is improved. If you want to support sick people and not make them sicker. Quite an assumption, I'll grant you. 2. The...

Excuse my ignorance @chrisb, who is Ellen DeFreitas? As a relative newbie I only know some of the history pre- 1990s, probably the more outrageous stuff. The name rings a quiet, distant bell, I think, but that could be my imagination.